Mini-update: Feeding Tube/Mic-key 10.08.2008
As most of you know, I had a feeding tube (PEG) installed in mid May. Once the pain caused by surgery was under control, I didn’t have any issues with the tube or incision site, but the long tube attached to my belly was extremely annoying to deal with. I had requested a mic-key from the beginning, but we had been told a PEG would need to be installed first followed by eight weeks of recuperation before we could replace it with a mic-key.
I was surprised but relieved when the mic-key procedure was scheduled for June 20, even though only six weeks had passed since the PEG operation. We did really well again getting to Emory on time that morning. Traffic was light and we made it to the waiting room by 9:00 for my 10:00 appointment. One of Jin’s close friends had been an intern with Emory this past summer working in administration, so she met us there to talk with Jin while he waited. There was some confusion when the nurse first came to get me, since they had me scheduled for another PEG tube rather than a mic-key button replacement. When she mentioned that I would be staying for 23 hours, I started to get concerned and told her we were told it would be a two-hour outpatient procedure. We figured out the misunderstanding pretty quickly, though, and she rolled me back to the same ward I’d been in a little over a month before. Since they weren’t going to admit me, I didn’t need an IV. I’d recognized the nurse as the same one who blew out a vein during my last visit, so I was pretty relieved. She also hadn’t been very receptive to Jin when he warned her about my troublesome rolling veins and suggested she use the smallest needle. My relief didn’t last long. When the nurse was helping me out of my shirt, she accidentally grabbed hold of the feeding tube as well and gave it a good tug. Ouch! I’m sure she’s a nice person, but she needs to learn to slow down and pay better attention.
I was in a similar procedure room as last time by 9:45, but we were a little delayed since the nurses had not been informed it was a mic-key procedure, which meant they didn’t have the right special-order supplies. I could tell they were irritated, and I was starting to wonder if we’d have to abort. Luckily, the doctor had one in his office. Once they found the mic-key, we moved to the radiology lab so they would be able to verify successful placement of the new tube into the stomach. One of the nurses told me the room had opened for use on Monday, so we had good timing at least. The procedure was very quick and virtually painless; the worst part was the multiple needle pricks around the feeding tube to numb the area. After that, I felt a tug and heard a pop when they pulled out the old tube, felt some pressure as they threaded the mic-key tube through the empty pathway, and then they were done. It probably took less than five minutes. Once the new tube was in place, the doctor poured a solution through to watch its progress and made sure the liquid fed into my stomach. The video was pretty crazy, but everything checked out. Even though I was feeling a little dizzy afterwards, I only wanted to rest for a short time and was rolling out of the ward by 11:00. While I was resting, my new nurse went to give Jin the mic-key kit we would bring home to use for feedings. Jin seemed aggravated but unsurprised that the nurse was unable to give instructions on how to use and care for the device. She did try to be helpful, but gave Jin completely incorrect instructions on how to use the tubes. When questioned, she simply kept repeating what she had just read from the instruction manual that came with our kit. It didn’t inspire confidence. Jin’s friend requested that the nurse return to the operating surgeon and obtain care and use instructions for the mic-key and the associated tube kit. The nurse returned, but still could not answer the questions that Jin and his friend asked. She eventually gave up the pretense and told Jin to call the surgeon with his questions. It seemed odd to Jin that the name of the surgeon was not the operating surgeon who had done my initial feeding tube or the mic-key replacement (to try to keep it from getting confusing, I’ll refer to them as the Operating Surgeon and the Supervising Surgeon from now on) but to the Supervising Surgeon that Jin had initially spoken to prior to the first PEG operation. Regardless, Jin got through the first attempt to use the mic-key at home without mishap. It seemed simple enough, and I was very happy to be rid of that foot-long tube!
As Jin read through the mic-key manual that night, he discovered that the water in the balloon holding the mic-key in place in my stomach was supposed to be checked weekly. Since we needed to verify and replace the amount of water in the balloon, Jin called the number for the Supervising Surgeon the next day and left a voice mail asking how much water was appropriate. He also inquired on how to obtain a new mic-key as we read that the mic-key generally needs replacement every three to eight months. We were disappointed and surprised that we had not been given that information prior to the procedure. It wouldn’t have made a difference, but it’s something we should have been told.
Immediately after getting the mic-key, I asked the Operating Surgeon when I would be able to go swimming. I hadn’t been allowed in the pool all summer, and I was impatient to join Luke and Abbie. The Operating Surgeon answered two days, so I thought I was being responsible by waiting five before getting in the pool. That was a Wednesday. By Friday, the mic-key site had some granulation (swollen blister-like tissue) and had started to bleed and leak fluid. I wasn’t overly concerned because there wasn’t much associated pain, but Jin was very worried. He made a few calls over the weekend and again on Monday to the phone number given to him by the nurse for the Supervising Surgeon, but they were never returned.
That next week, Jin happened to be at Kimberly-Clark (the mic-key manufacturer) meeting with a client and they discussed my situation. The client couldn’t answer Jin’s questions, but he tracked down an executive VP of the medical product group (who also happened to be a surgeon). After giving her the details, she told Jin I needed to see someone about wound care immediately. Besides the immediate wound care concern raised by Kimberly-Clark, she was also concerned that the mic-key was incorrectly fitted based on Jin’s descriptions. The mic-key had been causing deep indentations on my skin instead of lying flush. This was most likely the cause of the leakage and was probably keeping the wound site from healing properly. Jin was immediately contacted by a representative of Kimberly-Clark who offered to assist him with anything related to the mic-key. The representative is also a nurse and became invaluable to Jin; she was extraordinarily helpful.
Jin made numerous efforts to schedule an appointment at Emory for someone to look at the mic-key. They simply replied that everything I was experiencing was routine. Jin continued the battle to get my mic-key issues taken seriously by the doctors at Emory, while simultaneously attempting to enlist other non-Emory gastrointestinal surgeons to treat my wound site. Every other GI doctor that Jin contacted did not want to touch me until my Operating Surgeon had ruled out infection or other issues. Through Jin’s conversations with other GI surgeons and his continued contact with Kimberly-Clark, we learned a couple interesting facts while attempting to get my wound care resolved: the mic-key was originally designed for use in pediatric patients and the mic-key procedure may have been performed too early. The first explained why all the GI pediatric surgeons could answer Jin’s questions about the mic-key while the adult GI surgeons could not. After a multitude of calls and e-mails and Jin’s friend getting her hand slapped by the Emory administration for trying to help, we were finally given an appointment to see the Supervising Surgeon the morning of July 3. Jin had also managed to get the Operating Surgeon’s number and he eventually called Jin back the evening before the appointment. He reiterated that he believed everything was normal but said he would meet us at the Supervising Surgeon’s office the next morning.
It was the strangest doctor appointment I’ve ever had. We didn’t sign in or show my insurance cards, no one asked about my history or what medications I was taking, we were the only people there since the department wasn’t usually open that early, the nurse did not have my chart, and the room we were taken to wasn’t prepped. When the Supervising Surgeon came in and introduced himself (as Jin and I had never actually met him), he acted as though he was unaware of our issues even though it had been clear he’d been actively involved in the e-mail battle leading to the appointment. The Operating Surgeon was not present and we have never heard from him again. After looking at the mic-key site, he said the fit of the 2.5 looked perfect but he would be more than happy to swap it for a 3.0 if that’s what we wanted. He continued by saying we could put the 2.5 back in if the 3.0 ended up being too long. As I looked at him in disbelief, he started explaining my options again thinking I hadn’t understood. I understood just fine, I was simply shocked by his proposed method for finding the appropriate size and his complete disregard for any pain associated with repeatedly swapping tubes. When he continued on to say the procedure was only mildly uncomfortable, I really wanted to ask him how he could possibly know without experiencing it himself.
Jin tried to explain that we simply wanted the correct size, whether a 2.5, 2.7, 3.0, or some other length. Jin further tried to explain that based on his understanding, my complications would continue if the mic-key was fit incorrectly. When the Supervising Surgeon kept responding by saying he would do whatever we wanted, we got the feeling he just wanted to resolve the situation as quickly as possible so Jin would stop making noise with Emory. Since the Supervising Surgeon couldn’t locate a 3.0cm mic-key, we didn’t waste any more energy attempting to explain our expectations. The Supervising Surgeon then examined the wound, and while I thought he was simply continuing to clean the area, began to cauterize the site without any warning. When the pain kept escalating, I complained and his response was “Oh yeah, I’m cauterizing the site. It will probably hurt. I guess I should have told you.” Of course you should have told me! I understand that he is a surgeon, but his bedside manner needs an enormous amount of work. Once the site was examined and cleaned, he conceded that the mic-key might not be the best fit for me, but that if the next size up didn’t fit, we should go back to the original mic-key. The Supervising Surgeon then agreed to scour the other Emory campuses for a 3.0cm mic-key and said we could return the following week to try it out. In the end, the only good things that came from the appointment were learning the site wasn’t infected and getting a free set of spare feeding tube attachments. Otherwise, it was a disappointment.
On the drive home, Jin called his contact at Kimberly-Clark and confirmed our suspicion that the Supervising Surgeon’s proposed method for finding the appropriate size was not the standard product recommendation. We were told there was a measuring device to determine the appropriate tube length. I was pretty irritated. How can a doctor perform a procedure in good conscience without the proper tools? During the procedure, the Operating Surgeon was asked if the mic-key they found and installed was the correct size. His response to the surgical tech was basically “yes, she is thin, it will be fine.” At no time did he ever use a measuring diagnostic tool. Then for the Supervising Surgeon to suggest trial and error was mind-boggling.
Over the next few weeks, I continued to have problems with the mic-key site: it refused to heal and bandages showed abnormal discoloration and lots of blood. Jin was concerned enough for both of us, so I wasn’t as worried as I might have been. Through his continued dialogue with Kimberly-Clark, he learned more about the measuring diagnostic tool and measurement procedure. At his request, Kimberly-Clark delivered two diagnostic tools to the Supervising Surgeon to use during our next appointment. We waited until mid July for the appointment because Emory only had 2.5cm mic-keys which meant a 3.0cm had to be ordered. After numerous consultations with Kimberly-Clark, Jin also had a 2.7cm delivered to the Supervising Surgeon in case the 3.0cm was too long.
This appointment was just as strange as the first. The department wasn’t open, no insurance cards requested, no medical/prescription history taken, but this time the room at least had fresh paper over the exam table. His bedside manner had not improved. He removed the mic-key then cleaned and cauterized the wound again as I struggled to lie still. Then he inserted the newly delivered measuring device while I was lying down. Jin had been briefed by Kimberly-Clark: the procedure for taking measurements was to take two measurements, one lying down and one sitting up. The average would be the proper size. The measurement lying down to our surprise was 3.25cm! We couldn’t believe that I had been sized with a 2.5cm initially and that we had push so hard to be re-sized. Jin then had to heavily suggest (while simultaneously pointing to the paragraph in the product manual that came with the measuring device) that he take a second measurement with me sitting up. They sat me up and then took the second measurement. The Supervising Surgeon then asked Jin what he thought the measurement read! I understand that my husband can sometimes come across as difficult, especially when he is frustrated, but the patronizing question was completely unnecessary. Jin had actually tried to be respectfully persuasive instead of abrasive as I’m sure he would have preferred. Jin answered 3.5cm, but the Supervising Surgeon ended up installing the 3.0cm mic-key since it was the largest they had. My wound site had been tender for several days and he seemed to have little regard throughout the procedure for any pain he caused. The entire appointment seemed to irritate him. I was pretty angry with myself for crying; I felt as though I had lost to him. That doesn’t make much sense, but it’s how I felt. The Supervising Surgeon said that based on his experience, the 3.0cm mic-key looked perfect. When Jin pointed to the product manual and explained that the average of 3.25 and 3.5 was not 3.0 cm, the doctor agreed to order the next size up. He then told the nurse to make a note that maybe the 2.5cm mic-keys that Emory had in inventory should be traded for larger sizes and agreed to call Jin when the larger units arrived.
Unfortunately, we didn’t see any improvement and decided it was time to find another doctor. Now that we had ruled infection out, it should be easy to find another doctor for a second opinion on fitment instead of emergency wound care. Jin received a recommendation for one of the largest GI practices not affiliated with Emory. On July 24, Jin took the morning off to drive me to an appointment with one of their specialists who, according to his staff, was familiar with the mic-key. At the appointment, Jin explained the situation and the doctor examined the wound site. He then apologized and informed us he’d never seen a Kimberly-Clark mic-key and could not advise us on fitment. I’m glad he was candid, still it was incredibly disappointing and a complete waste of time. At least we weren’t charged for the visit.
For another frustrating week, Jin continued to call different GI practices in Atlanta and even resorted to calling the Medical College of Georgia to speak with GI nurses there. This time he wanted verification that the GI doctor had actually installed or was at least familiar with fitment of a mic-key. Then on July 30, Jin got really lucky. He was given the number to a pediatric nurse who ordered a large quantity of mic-keys for Children’s Hospital. He left a voice message and surprisingly received two separate return calls. Since the nurse he had called was on vacation, the other nurses in the practice were returning her calls. The first nurse Jin spoke with agreed to try to enlist one of her doctors to see me and scheduled an appointment for me the next day at a satellite location in Rome. Later, she called back to cancel because that location did not have the necessary equipment for fitment. Then Jin received a call from another nurse, Cindy Witkowski. Cindy immediately scheduled an appointment for me with a pediatric GI doctor that same afternoon. It seems as though pediatricians are the only GI doctors in Atlanta with experience installing mic-key buttons, probably because the mic-keys were originally created with children in mind. Over the course of this saga, Jin had spoken with numerous pediatric GI surgeons who wouldn’t agree to see me due to liability concerns (initially due to immediate wound care and then lack of malpractice insurance coverage because I was an adult). As we later discovered, Cindy’s best friend had experienced a similar nightmare in getting her mic-key sized properly. Dr. Saripkin, the pediatric GI doctor who agreed to see me at Cindy’s request, unfortunately has colleague who is currently battling ALS. Both Cindy and Dr. Saripkin were very kind. They listened to our saga and then answered all of our immediate questions. Dr. Saripkin then took the measurement and swapped the mic-key for a 3.5cm (there is no intermediate size between 3.0 and 3.5, slightly larger is much better than too tight). Swapping the tube still hurt, but it was obvious he was trying to be gentle and was at least cognizant of the fact that the procedure was painful. He later said his colleague with ALS specifically told him to never tell anyone a feeding tube swap of any sort wasn’t painful. Throughout the appointment, it was clear that he and Cindy actually knew what they were doing. Dr. Saripkin is the first doctor who was able to explain proper care and answer all our questions regarding the mic-key. It was a huge relief to know I finally had the correct size. They also gave us a couple prescriptions to help my wound site and stomach lining heal. As sad as it sounds, it was incredibly refreshing to have faith in a doctor’s competence.
I’d been waiting to send this update hoping I could report that all issues had been resolved. Unfortunately, even with the correct size, I still have granulation at times and a little discomfort, but it is much better than it was when the mic-key was too small. Overall, I’m a lot happier with the mic-key than I was with the PEG tube, and I think it was worth the headache. Jin may not agree. It’s still hard for me to understand why we had so much trouble getting it properly sized. Without a very persistent and well-connected husband, I would probably still have the original mic-key and many more complications. I’m very lucky Jin is so hardheaded and that there are kind professionals who care about the well being of the patient.
I promise I tried to condense this a bit! Congratulations if you made it all the way through. 🙂
Love,
Kim